Non-reimbursed ‘out of pocket’ costs to stroke patients have not been included in existing cost of illness studies. We aimed to determine the nature and magnitude of ‘out of pocket’ costs to stroke patients during the first year after stroke. ‘Out of pocket’ costs during the first year after stroke were documented for 165 persons registered in a community-based stroke incidence study during 1996/1997. Virtually all cases reported some ‘out of pocket’ costs. The average cost over 12 months was A$1110. The highest cost items were home modifications, aids and equipment. The most commonly incurred expense was for prescription medications. Total ‘out of pocket’ costs incurred by first-ever stroke patients in Australia in 1997 were estimated to be A$29 million or 5% of the total cost of stroke. The majority of ‘out of pocket’ costs relate to post-acute care aimed at minimising disability and handicap rather than to ‘acute’ healthcare.

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